I am a fifty something wife,mother, sister, grandmother and friend. I started blogging as a coping mechanism during my beautiful daughter's final journey. Vic was desperately ill for 10 years after a botched back operation. Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.

When my beautiful little girl exhaled her last breath, it felt as if my heart was ripped into a million pieces.

One year and 5 months have passed and my heart is still in a million pieces. But, the pain is no longer that same raw pain. Sometimes it is a sharp, searing pain; sometimes a dull heartbreaking pain. At times I feel so alone, numb and at other times I am convinced that I will lose my mind with grief.

But, the pain is more “refined”. It is no longer that raw, unbearable pain.

There are times that I feel that my nerve endings are exploding. And yet, there any many things I can no longer remember. I read today that it is my body is protecting me… I am grateful for it. I am glad that I have forgotten some of the horror of Vic’s death. I am clinging to the good days.

I went away with two friends last weekend. It was amazing. We laughed until we cried, we spoke about the death of our loved ones, we loved and supported one another. The empathy stemmed from knowledge.

On our first night in the mountains I dreamt of maggots. There were maggots everywhere. I tried to kill them, but they kept crawling out of everywhere. I was scared and nauseous. I am petrified of maggots!

To see maggots in your dream represent your anxieties about death. It may also be indicative of some issue or problem that you have been rejecting and it is now “eating away” at you. You need to confront it for it is destroying your sense of harmony and balance.

Maggots as true to their characters signify similar emotions in real life if appear in dreams. The strongest emotion the maggots dreamer having is the fear of its own death. You can say it as fear or curiosity related to death but the persistent thought of death can be the result of such type of dreams. Maggots in dream also signify that the person is far away from mental and spiritual peace which can prove harmful for him in many ways.
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

A very common dream of maggots is to see them gathered around you and you are trying to remove them as quickly as possible. This you are trying to do with vacuum cleaner or burner or chemicals. All the dreams suggest the need of your brain to be free from nay complications and guilt. Your attempt to kill them shows that you want to bring thing back in order. This also means that you are facing some troubles in life and standing on your grounds to let it pass
More:http://www.gotohoroscope.com/txt/dream-interpretation-maggots.html

So, which one is it?

I do not fear death. I fear dying in pain and indignity. I fear being a burden to my loved ones.

I have often said that when I am dying I want to be dropped off at a hospice. My loved ones must kiss me goodbye and leave. I do not want them standing next to my bed watching me gasp for breath… I want a big sign put up above my bed that must read “Do not touch”.

I am facing difficulties in life. So much has changed in the past 516 days. I have lost more than my child. I have lost being a mother. I lost my best friend. We lost our laughter… Judy reminisced this weekend about how Vic and the boys would laugh at night when they said goodnight. I have lost others that I love because our pain collided.

Yet I am alive. My life goes on despite the terrible void that Vic’s death left. The boys are so amazing. Soon Jared will attend his Matric farewell. Next year he will go to university… firsts that his mom will not be part of…I can just imagine the excitement if Vic had been around.

When you lose a child you get caught up in a maelström of grief. The firsts never end. Every morning the pain starts all over again. The grieving never ends.

For a long time after Vic had breathed her last breath I lay next to her. I touched her face and hugged her close to me. Something I could not do in life as I may have fractured a bone or two. Everybody left me alone with Vic. I was so grateful for that precious time with my angel child.

I washed Vic and dressed her in her favourite pyjamas. It was so difficult trying to dress her limp body. Although I knew it did not matter anymore I was scared I would hurt her. Years of conditioning I suppose. I was shocked to see that a large part of her body had already discoloured. Her right hand shoulder, her back and the top of her legs were black and blue. When I washed her little body at 7am that morning, a mere 3.5 hours earlier, only her little toes had started discolouring… Her back was still so warm from the fever that had racked her body. Her hands, feet and face were cold to the touch.

I brushed her beautiful hair.

Then I realised that the boys could not come home until Vic had been “removed”. I phoned Siza to pronounce Vic and the undertakers and requested that they send their people to come and fetch my child. I lay with her for a further 30 minutes. I held her tight and cried for her. I just wanted to die.

Siza, arrived…. She was so matter of fact about Vic’s passing. She put cotton wool in my child’s mouth because Vic’s jaw had relaxed! I wish I never saw that!

Just before 1pm the undertakers arrived. I was torn. I did not want her to go but I could see that her beautiful soul had left her body. It was no longer my beautiful baby girl who lay in that bed. In death Vic looked like a stranger… yet I felt that if Vic left that room she would forever be gone. Strange…..

The undertakers walked into Vic’s room. They were so smartly dressed in dark suits, white shirts and red ties.

They hugged me and said “When you are ready… We can wait”.

I remember thinking “I look so ugly when I cry. These strangers can see me cry!”. I nodded and they wheeled in a gurney type “bed”.

They meticulously folded up the outer cover to reveal a plastic sheet. They lowered the gurney to the same level as Vic’s bed and took her from my arms…

Someone said “Be careful. She breaks bones easily…”

They lay Vic on this horrible plastic sheet and covered her in it. I wanted to die. I still want to die just thinking of it. My beautiful baby girl, who only deserved Egyptian cotton, wrapped in hard plastic!! They quickly replaced the cover and zipped it close. I think my sobs were driving them mad.

Vic looked so tiny on that darn gurney! Tiny and dead!!

Minutes after one my baby girl left home for the last time. Never again would she grace us with her presence. Never again would she shuffle down the passage, never again would we hear her laughter or her cries of pain.

We sat in complete silence counting the shallow breaths between the deep breaths. I counted 25 breaths between every deep breath.

“It is changing” I said

My brother came through just before 5. “Why did you not wake me? I was supposed to be on duty from 4…” he said

“I could not sleep” I said

The three of us again just sat and listened to Vic’s breathing. She was motionless and her eyes were slightly open. Her feet, hands and arms were cold. The rest of her body was burning up with fever – 40+ degrees C. Her little toes had started discoloring.

At 7 O clock I washed Vic. I had started cutting open T Shirts so her little chest was covered. I was too scared to move her – scared that she would fracture and that it would cause her more pain. I put deodorant on her and baby powder. A light spray of Estee Lauder’s “Beautiful” finished off her beauty routine for the morning.

At 10 o’clock Lee had to leave. She had a meeting that could not be changed. She cried when she left.

I lay next to my beautiful child. My hand was on her heart and my head right next hers. I could hear her breathing becoming more and more shallow. Leon arrived. The three men stood at the bottom of her bed.

I whispered words of comfort and love to Vic – non-stop….

“I love you angel child… There is nothing to be scared off…. It is almost over baby! I love you so much” I repeated the words over and over again.

I could feel her little heart beating softer and softer under my hand.

“She is going” I said

Her little chest hardly moved. Her breathing was so shallow! And then it stopped! For a couple of seconds there was no movement. No heartbeat. No breathing. And then a tiny little flutter…and then nothing! Just nothing!!

Where do I start? How do I begin a farewell when I still can’t believe you’re gone? How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love. I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever. Over the years people have complimented me for being a good mother but I truly cannot take credit for that. You were born good, and great and amazing. You were the one who taught me lessons in life. I believe you are an angel God sent to teach me.

You taught me love. You taught me honesty. You taught me to love unconditionally. You taught me how to forgive and how to be strong. You are the strongest person I have ever known. You gave me strength when I was weak. When times were sad and tough you reminded me to be grateful for the small things in life. You taught me how to be myself. Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing. It was so important to you to live. And that you did. You gave birth to not one beautiful baby but two! You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world. You rewrote medical history. You defied death for so many years… You mocked bad news and a poor prognosis…

You made me so proud. You have always been my greatest pride and joy. At school you excelled as a pianist. As a mommy you were an example to all. As a dying person you were brave beyond words.

I’m not sure how I can live this life without you. You worried about me just as much as I worried about you. You told everyone how worried you were that I would not cope without you. You fought so hard to stay alive. You fought until you gave your very last breath. You did not want to leave your boys. You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you. You made an incredible impact on the world. You left two monuments of your love and mothering skills. Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come. It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you started seeing angels. You saw Gramps, Uncle Dries, your father and Auntie Marlene. Then a week before your passing you said “My whole room is full of angels” You fought to stay alive every single day of your life. Eleven months ago you called a family meeting and told us that you had decided enough is enough. No more surgeries. No more hospitals.

Over the past 11 months you made your final wishes known. You planned your memorial service. You spoke to the boys about what was important. I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body. But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life. You were always my first and last thought. I feel numb and as if I am in a bubble. You will be happy to know that we have been surrounded by love and support. But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore. But then I think, how can I be sad when I know you’re in a better place? How can I be sad when you brought me so much happiness? How can I be sad when God is already working miracles through you? How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother? How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes? I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted. We love them so much. No-one in the world can ever take your place. We promise we will keep your memories alive. We will honour our promises to you.

So now we must bid you farewell. It is your time to run, free from pain and suffering. We will always love you. We will never forget you.

Yesterday I posted on “time”. Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying

Some of the stages of dying start to be discernible a few months before death occurs.

Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm.

Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods. This year she relived every minute of her father’s final journey… Vic has started living in the past.

I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

Vic no longer eats big meals and I seldom hear her say “I am ravenous”. Due to the 81 abdominal surgeries and multiple bouts of septicemia Vic’s absorption is very poor. (Poor absorption = BIG appetite!) Vic used to have the appetite of a horse – always nibbling and scrounging for food. Now it is sheer discipline that keeps her eating. She knows she cannot have medication without eating first. Strange thing is that she is not really losing weight. Hospice says it is due to the high levels of cortisone she takes… I have been told by Hospice not to worry about her loss of appetite. Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria. Our bodies actually start relaxing into this stage of dying.

Vic still drinks a fair amount of coffee. She used to drink it warm but now she dozes off before she has finished her cup of coffee. She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep. It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side….

Reduced appetite and increased sleep is called “Signposts for dying”.

A couple of weeks ago Vic was very emotional. She would tear up without any reason. This stage has passed. It is as if her tears cleansed her soul.

Vic is battling with loneliness. She hates being alone. If she could she would have one of us around her all the time. She often complains that we do not spend time with her. We do spend a lot of time with her. She just dozes off and then we leave to carry on with our lives… The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

Vic is not in good shape at all. She is suffering severe cramping and nausea that is not responding to any of the medication. The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning. She also suggested that Vic be admitted to Hospice In-Patient’s. Vic and I firmly declined…

It is obvious that Vic has one or other infection. I think it is the abdominal sepsis. She seems flushed and feels hot and cold. The thermometer does not reflect her running a fever. This is obviously something as Ceza mentioned it to the doctor. She explained that this happens when the auto-immune system is compromised. I have tried to Google it but without too much success. I will ask the doctor tomorrow morning.

Vic is in terrible pain tonight. I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even. She whimpered in her drug-induced sleep….

I know the shutting down process has started. Not because Hospice told me but because Vic told me.

Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind.http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.

My Mom died a bad death! Two weeks after major surgery she died an agonizing death from septicemia We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you but we will also be at peace… We will think of you and smile…

Today I read heart wrenching posts of bloggers who are in so much pain! Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness. I am so sad and angry for all the pain out there.

Katie blogs as follows: “Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I wantneed the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

I shivered when I read this post and for a while I was blinded by tears. I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession? Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness. In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years. The head of the department is a professor of Anesthesiology. Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations. He knows how little of her intestines are left…. So does the professor. Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition. We fluctuate between mechanical obstructions and diarrhoea. 400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time. Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.”http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin. At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management. In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized. One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates. Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid. A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug. It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate. It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive. They live in rural areas where there are no doctors or pharmacies. If they are lucky there may be a clinic with a nurse…. A doctor’s prescription is needed for morphine. No doctor = no morphine = painful death. In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace. “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team! I am grateful that Vic has been spared further suffering. We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die. Then you start thinking who would care…if one day they woke up-and you weren’t there.” Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“

Muriel posted this message on Vic’s Facebook page. Today it echo’s my feelings. I am so tired of living. I am so tired of this miserable existence that we call life. Surely, there must be more to life than breathing!

Today was a day out of hell. I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating. I got up with great difficulty, showered, and made Kreemy Meal for my family. Both Jared and Vic need soft foods. I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic. Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!! I phoned Vic to check on her only to be told that she had gotten ill all over herself! She had to bath and I was not home to help her! I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again. Once she felt better, she would have to ask Primrose, the helper, to help her bathe. I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”. Some good news was that Esther came to visit and helped Vic bath. That girl is an absolute saint! Esther also took Jon-Daniel to the movies. I am so grateful that he could get out of the house of gloom and illness.

Then the system failed… The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic! A 20-minute trip became a 1.5-hour trip! Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00. In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him. I put it through the strainer and rushed off to his room with a tray and his pureed food. I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor! I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off. Poor Jared had to eat soup for dinner. He is so tired of soup!

Well today, I am fed-up with life. I am tired to the core of my soul. I do not want to hear that I am doing a great job or that I am strong. I do not want to hear anything! All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party? I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill. I do know I cannot afford to cry. It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed. I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives. Life is already so hard for them. Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on. I have nothing but I have everything. I just don’t want to understand.“

Vic the same physical, emotional, and spiritual needs as everyone else. Her biggest fear is however the pain that will be involved in her inevitable death. As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.

The average physician and pharmacist’s concern is addiction! So what? Addiction at this stage of the game is the least of my problems. I do however believe that Vic has become morphine resistant. In hospital last week Pethidine and Perfalgan worked well. This is one of the reasons why it would be great to have Hospice involved in her pain management.

The Pain Clinic is great but they see Vic every couple of months. In the past 10 months I have collected her monthly morphine script on 7 occasions. Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe?? Imagine if I had to drag her to the pain Clinic every 28 days…

I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone. Family members closely monitor the effectiveness of pain management. I take Vic’s vitals a minimum of 3 times a day. Her blood pressure and heart rate are clear indicators of where her pain levels are at. I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.

Loss of dignity and control.

Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.

Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress… Vic has to endure this indignity every day of her life.

Nights are especially poignant. Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep. One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them. Vic sleeps badly at night. She wakes every two hours from pain and then she is too scared to go back to sleep. She refuses to take a sleeping tablet. At night Vic is at her most vulnerable… I am so scared that she will fall at night whilst we are sleeping.

What if Vic is nauseous and chokes in her own vomit sleeping?

That loved ones will be damaged and unable to manage

Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”

If children are involved that they will not be looked after properly.

Vic believes that no-one can ever love the boys the way she does. That is true. I am not a particularly “oochy goochy” person. At times I believe I failed Vic as she has an emotional neediness that scares me. I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments. I don’t have many friends. My family is everything to me.

Vic however often says that she is happy that she moved back home as she has seen how settled the boys are. They are truly happy living with us.

Vic knows that I will care for the boys for the rest of my life. We will guide them and provide for them in every which way. We love the boys with all our hearts.

The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity? I pray that she will…

I have been researching the effect of a mother’s illness on her children. The boys are two beautiful, well-adjusted, honest and compassionate young men. Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life. At the tender age of thirteen Jared was cooking for the family… This must certainly have an effect on how the boys perceive relationships with people.

Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their parents. They in effect become parents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.

“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.” The boys, especially Jared, falls into this category 100%. When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode, At the time I thought it to be extremely unhealthy that he already has this caregiving character trait. He used to always make the tea and offer to do so much around the house and for his Mom.

I have put a stop to this. I pray it is not too late for the boys to adjust to a “normal” household…

It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother. Vic has raised her sons to be respectful.

“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”

Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday. When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again. This is what Vic does.

Before Jared was wheeled into theatre he whispered into his mom’s ear. She took his hand and said “I promise”.

Vic, drip in hand, walking with Jared to theater!

The surgeon said the operation would last two hours. Vic dutifully went back to bed and rested. One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son. I begged her to at least sit on the chair but she refused. “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”

It took a superhuman effort but Vic’s love for her son drove her to keep her word. It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own. As Vic did. As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.

The vicious cycle of anger truly rose to the occasions on Wednesday. I got angry with Vic because she was not putting her health first! I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother. I want to wrap her in cotton so she would be spared that extra day…

Yesterday Vic said she doubted whether she would see the end of the year. She is however adamant to be at Jared’s confirmation…one more goal…

Go Girl!!!

Well, Vic is home. I am so grateful. She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!

I have become accustomed to the ICU at the Donald Gordon Hospital. DGH has one of the best Intensive Care Units in the country. There are always 3 ICU doctors on duty and well as a HIGHLY skilled Head of Department. No full-time doctors or pain specialists in the Union’s ICU.

The difference is that the DGH is a private teaching Hospital and does not handle trauma patients. Only critically ill patients are admitted to the Donald Gordon ICU. The staff are all ICU specialists. Ok, I must admit that they also know Vic very, very well. For the past 7 years they kept Vic alive. Time and time again she has amazed and astounded them by surviving every conceivable Super Bug, ARDS (Acute Respiratory Distress Syndrome), sepsis, organ failure… they know exactly how her body reacts to pain and how she reacts to different drugs. The…

Eleven years and ten days ago Vic had her first blotched back surgery that lead to 81 abdominal surgeries. She lived another 4027 days with excruciating pain, indignity and misery because of the ego and arrogance of a neurosurgeon. Her little body systematically being destroyed by the sepsis left behind by an idiot doctor.

Dr FS, you arrogant fool, you stole my daughter’s life, you stole a mother from two young boys, you stole her smile, her joy, her laughter, her marriage, her hope! You gave her despair, pain, a mangled broken body, faeces running out of her intestines into a bag, an open wound.

You coward, you would not face me in the passages of the Milpark ICU. You denied me the truth. You stole my child’s life!

You called my child a morphine addict. You withheld opiates from her after surgery. You SAID that the sepsis in the…

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A dreary day like today would be a good day to clean out my bedroom closet. Instead I am trying to process something I read earlier this week which continues to disturb me.

My friend, who is also a grieving Mom, sent me a link to a well-written raw response to a “pastor’s” misguided views on grievers. I am not going to mention this “pastor” by name or toot the name of his book. I base my opinion on the information provided in the response written by Lynda Cheldelin Fell in theblaze.com as well as book reviews I found online.

Ms. Cheldelin writes:

“For your trespasses against the bereaved are not your fault. Sadly, you portray the perfect example of a larger problem in our society known as grief illiteracy.

Grief illiteracy is a dreadfully expensive and problematic issue in America costing millions in lost wages, lost relationships, lost health…

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Dee articulates the pain and loss of losing a child. The loss of not only her child but of those we relied on to support us through the most dreadful loss ever. It is only on WordPress that we are safe and surrounded with love and understanding.
Thank you Dee.

Sunday. Father’s Day. As many remembered and/or honored their own father yesterday, there are fathers among us who are living without a child which adds a new level of discomfort and sorrow to the day. My husband is an excellent father and it pains me that he not only knows the loss of his own father but is also a father living with the unnatural loss of one of his children. Amy would have given her father some over the top expensive gift. Money was never an object for my generous one. Her absence is a flashing neon light with an alarm which randomly goes off depending where you step each and every day.

Having recently recovered from Mother’s Day, I know how difficult and complicated Father’s Day is for a parent living without their child. Our children have always made it a point to honor us as parents and…

“Before you know what kindness really is
you must lose things, feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness,
you must travel where the
Indian in a white poncho lies dead
by the side of the road.
You must see how this could be you, how he too was someone who journeyed through the night
with plans and the simple breath
that kept him alive.

Before you know kindness
as the deepest thing inside,
you must know sorrow
as the other deepest thing. You…

“People who are mentally unfit should never have children. My God this news of the father wanting custody set off this unfit mentally ill mother yet again. It is just to much strain for people who are mentally ill to bring up a child safely. The father is just as much to blame by marrying a mentally ill person in the first place to have children. God help them.”

“why are good baby given to bad mothers like this they dont deserve to have children I hope god punish her.”

Thank goodness that some sanity prevailed in some of the comments:

“I feel bad for the mother. When people grieve they can fall apart mentally, especially when a parent loses their child.”

“How do you know she was a bad mother? She was obviously in shock to be doing what she did. Aren’t you quick to judge?”

This is the world we live in. A world that consists of two sets of people… Those who have lost a child and know the devastation of mourning a child every single day of their lives and those who can pick up a phone and talk to a living child; who can go visit, hug and hold their child(ren).

The first will more than likely comment “why are good baby given to bad mothers like this they dont deserve to have children I hope god punish her.” and a parent who knows the devastation of losing a child will potentially comment “How do you know she was a bad mother? She was obviously in shock to be doing what she did. Aren’t you quick to judge?”

I know that Vic’s death left me reeling from pain, anger and loss. It was so hard letting her go. It was impossibly hard seeing her little body leave home for the last time.

Yet, some Facebook friends will pass snide comments about people posting photographs on their Facebook pages of the dead child and soppy messages… Yes, I am guilty. I post photos of Vic and soppy messages that convey my longing for my beautiful little girl.

Unfriend me if I get up your nose. I will grieve whichever way I chose. Your child(ren) are alive and you have absolutely no idea of what true loss is.

My child is dead. I burn candles for her and sometimes I fall asleep holding a photograph of her. I have sat sobbing just hugging her ashes. Does that make me mentally unfit? No, I am just another grieving mother and you will never understand. And, I hope you never have to understand!